Who we are
I’m Tania and I’m a woven wrap enthusiast and blogger. I have hypermobile Ehlers Danlos syndrome, postural orthostatic tachycardia syndrome, basilar type migraine and a number of other related conditions. My mobility reduced significantly when I came off my medication to safely try to conceive and I needed to use crutches and a wheelchair to move around. My health declined further during pregnancy. Significant joint instability, pain, fatigue and a high heart rate meant that I was housebound or bed-bound and needed to use my wheelchair to safely move around. Our strategy while preparing for parenting with my disability was to plan for the worst and hope for the best. Since pregnancy, my mobility has improved. However, I still need to use my wheelchair on a daily basis. Unfortunately, a shoulder injury has meant that I’m no longer able to use my crutches.
I’m Jen and I am one of the Directors of CalmFamily. I have had Myalgic Encephalopathy since I was 12; at my worst I’ve had periods of being housebound or bed-bound. I have had years as a wheelchair user, or using a walking frame to get around if I left my house. When I was pregnant with my first child I had very limited mobility and was in a lot of pain. I also used to tip over frequently. We were preparing to parent on the basis of my level of wellbeing in pregnancy, assuming, if anything, my disability would slightly worsen. As it happened I had a remission and have, in general, had a higher level of mobility since having my children, although I still manage my energy levels and fluctuations in my condition on a daily basis.
Becoming a parent
Becoming a parent, whether for the first time or not, is a step into the unknown. There are so many things to consider and plan for. For parents-to-be with a disability, there are even more things to think about in order to ensure the whole family is happy, healthy and thriving.
It’s worth remembering that each family’s needs will be different, depending on the nature of the parents’ disability and the support they have available to them as well as how they want to raise their child(ren).
How will you get around together?
Tania – getting around outside the home
This may sound very basic, but when preparing to parent with a disability, it’s important to consider how you’ll move around safely with your baby. A wide variety of disabilities and medical conditions make moving around challenging. And that’s without having a baby with you! So it’s important to consider the different ways you might safely navigate your home and social environments with a baby.
Slings can be an important part of this for many disabled parents. As a wheelchair user, I need both hands free to be able to move my chair. Babywearing allows me to hold my daughter and move around safely and independently. In my local area, it wouldn’t be safe to have a pram attachment made for my wheelchair. There are tall fences blocking my view of the roads and uneven pavements to navigate. Plus, I find it hard enough to push a wheelchair trolley round the smooth, flat floor of a supermarket!
But, it’s not just wheelchair users who need to have their hands available for aids. Those who have a guide or service dog, people with crutches and white cane users, will likely need at least one hand for their aid(s). Babywearing makes this possible!
Jen: getting around inside the home
When I was first preparing to parent I was a wheelchair user or needed to use a walking frame on a good day, when leaving the house. A lot of the time I was unable to leave the house. Around the home I moved around by holding onto banisters on both sides of the stairs, grabbing furniture to keep me upright in my frequent “tipping” episodes. This continued through pregnancy and I realised pretty quickly that being ‘hands free’ whilst moving a baby around the house was key to parenting with my disability.
I was given a second hand stretchy wrap, and was also given a preloved sturdy (read heavy) pushchair. The heaviness of the pushchair meant that I could put quite a lot of my weight through the handle without it tipping, so we hoped it might act as a walking aid.
This was a reasonable theory, except that most walking aids are designed so that the handles allow your shoulders to be in a comfy position, not somewhere around your ears. They also tend not to weigh about 20kg without a baby in them! The stretchy wrap, however, was a total revelation. At first I looked at it with total suspicion, but when the mum who had not used it for ten years managed to put it on in a moment I knew I’d be able to learn it. So I did. Sorted. Around the house I would tie my little one on and we would move around safe and hands-free.
One consideration is often about moving you and your baby between levels and surfaces. Not necessarily between floor of a house, but where do you change your baby? On the floor- how will parent and child get down to the floor? How will they get back up again? On a changing table? Is the height of the table based on a person of average height being in a standing position?
Often “normal” parenting products assume a lot about our size, shape and abilities, that may not suit all abled people, let alone people whose needs differ. “Adaptive” parenting products, designed for parents with a disability, tend to come with the price tag that you might expect to find on premium items. This may not be in line with the budget you have available for a changing table, or pushchair. Make do or adapt are good options. Having someone shorten a changing table may work. My solution, when I was struggling, was to change the nappy on the floor, then put my baby into a sling, so I could use my free hands to get myself up again!
We live in a 3 story house. When we moved in, we had no idea that I had hypermobile Ehlers Danlos syndrome, let alone that I might need to use a wheelchair! When planning for parenthood, we knew that I wouldn’t be able to simply go upstairs to the nursery every time our baby needed changing. So my husband put together three changing baskets – one for each floor. They contained all the essentials for nappy changing, as well as other useful items like a muslins and changes of clothes (for both of us – Elise has cow’s milk protein allergy and we regularly went through three changes of clothes in a day!). This was instrumental in allowing me to change nappies independently. This is a pretty sensible idea for all parents, even those with no disability!
Responding to yours and your baby’s needs
Jen – when living with a chronic condition can be a positive
Living with a chronic medical condition that fluctuated meant that my life involved responding to the circumstances my body presented me with on a daily basis. I didn’t know from one day to the next how well I would be or how much I might be able to manage. This was actually a really positive thing for me when it came to parenting. I was used to taking each day as it comes. I was used to responding to the needs that my body was presenting me with. This meant that it wasn’t a huge mental shift to accommodate and respond to the needs of a baby.
Yes, it was challenging to meet both of our needs. However, I didn’t have a life I was in control of or that followed a fixed routine. In this way I was much better prepared for the realities of parenting a newborn than many other people I knew having a baby at the same time.
Will you need specialist equipment?
While coming off medication to safely try to conceive, my mobility declined.
One of the problems we anticipated was how I was going to be able to get out of the house independently with our daughter. I have a manual wheelchair, as a powered chair wouldn’t fit into the boot of a standard car. However, I struggled to self-propel myself on anything other than a smooth, flat surface. So, we fund-raised for a power add-on. This has allowed me to do ‘normal’ things, like take Elise to have her injections and attend local baby groups. It’s also allowed us to do some really special things, like volunteer with the sling library in a local city.
Initially we went for the usual sleeping arrangements, the NHS advised Moses basket/cot in your bedroom. So we attempted to put Jacob down in a basket for several weeks. However, I was not able to get him in and out of the basket when in bed. As the basket was on my side of the bed, I wasn’t easily able to get in and out of bed. So for every waking and feed, Andy had to get out of bed, walk around, pick him up, and hand him to me. Then when he was settled I had to wake Andy again, hand him back over, so he could take Jacob back and attempt to transfer him to his basket. You can imagine how often that resulted in a re-awoken baby, can’t you?!
In the end we researched safe bed-sharing. Andy, who sleeps more heavily, moved into the spare room. I moved to just blankets on the bed and just a mattress on the floor. This actually helped me with getting in and out of bed, as my bed was a bit too high! My medication wasn’t an issue, but it’s definitely important to check that your medication will not make you unresponsive or sleep very deeply. I was able to breastfeed all night, get sleep, and we didn’t have to move Jacob about. Everyone was better rested.
Everyone’s perception of normality is different. Everyone finds some things more or less of a struggle, this is true of all parents, all people. People parenting with ongoing conditions or disabilities may be more used to planning strategies for coping with changes in circumstances, such as adding a child into the family mix.
This blog is not a how-to guide. It is a collection of our insights on how our conditions and disabilities affected our transition to parenthood. Your experiences will be different, but our insights may strike a chord. And so might your insights. If you’d like us to add your experience to this article, whether a struggle or a strategy please get in touch. We’d love to hear about considerations most parents don’t have to make and ways you adapted to your new role. We would like to add to this article to make it include the diversity of our experiences. You can message us on Facebook or Instagram, or email us at firstname.lastname@example.org
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